Emilia was critically ill when she was diagnosed with patent ductus arteriosus (PDA) and aortic stenosis. This is her story, told by her mum, Lucy:
Emilia had normal scans, although at our 20-week-scan the sonographer spent a long time on her heart. However, she wrote nothing in my notes, and she didn’t mention anything.
Emilia was born three days late, on the 21st July. We were told she was breathing quite fast, but that it should settle down. They observed her every 20 minutes.
I was taken to theatre for stitches for three hours, but my partner stayed with Emilia and her breathing settled.
During her first 24 hours, Emilia cried so much. She barely slept, and midwives told me she had colic, despite also saying that colic was rare in newborns.
We had to wait an extra day for a repeat hearing test, as she failed her first, and on her final check up before discharge, they noticed she was breathing fast again.
Emilia was taken to SCBU without me for more tests, which indicated she may have sepsis and this was causing her fast breathing. We stayed in for four more days.
Before we left, the paediatrician came to tell us that Emilia had a heart murmur, which was probably benign, but we’d need to come back for a cardiology appointment.
During Emilia’s first few weeks at home, she cried, didn’t feed more than an ounce and she put on no weight.
We attended A&E four times after choking incidents and noticing her sucking in under her ribs.
I chased her cardiology appointment and they said it hadn’t been requested. They weren’t able to see her until the November.
On her fifth A&E visit, I was not going to be told it was reflux, or that everything was normal. They agreed to do an ECG and x-ray. After, I took her home and they said they’d ring me if there were any issues.
The next day, I received a call to say her results showed a problem and I had to take Emilia directly to a specialist hospital the next morning.
Once we arrived, they told me Emilia’s lungs were drowning in fluid and her heart was failing. After an ECHO, they discovered she had a patent ductus arteriosus (PDA) and aortic stenosis.
Emilia had three weeks of diuretics to try to ease the fluid and to give the patent ductus arteriosus (PDA) time to close. She was so pale and thin, and had already suffered for six weeks, so they decided to do a catheter procedure within the next few weeks to close the patent ductus arteriosus.
Emilia is now two-years-old. She has gained weight and we discovered she has a genetic condition, which is the cause for her heart issues. She is still being monitored and has new issues being investigated, but the hospital has been amazing.
My poor baby spent the first few months suffering, then had an operation at three-months-old. My eldest daughter had to lose her mum and newborn sister for the whole time we were in hospital; it was a huge strain for all of us.
I genuinely believe that, if her heart murmur had been investigated, or if she had been checked with a pulse oximeter soon after birth, then all of her suffering could have been avoided and she would have received the treatment she needed straight away.
Or, if the sonographer was more confident and mentioned her concerns about Emilia’s heart at my scan, then it could have all been diagnosed before she was even born.
I stuck by my instincts. I knew that her being so pale and skinny, not eating and crying all the time was not right. So please, if you have concerns about a newborn, then no matter how many times you feel you need to take them to hospital, just take them!
I can’t even begin to imagine what would have happened if I hadn’t have taken her to A&E that fifth time. If I had believed them when they told me nothing was wrong, Emilia may not be here today.
Our Think HEART campaign helps parents and health professionals recognise the five key signs a baby may have a heart condition. Learn how to Think HEART and order free resources here.